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A Lifetime of Struggle Against HIV/AIDS

July 18, 2013

When the first cases of AIDS were reported in the United States, medical anthropologist Richard Parker had just started a doctoral program at University of California, Berkeley. Soon after, he found himself in the epicenter of one of the world’s most devastating epidemics. The fortuity of being in that particular place in that moment in history changed his life irrevocably.

For more than thirty years, Dr. Parker has been a part of the global struggle to prevent, detect, and treat HIV/AIDS. He has occupied many roles throughout his extensive career, including researcher, professor, author, and advocate. Dr. Parker is also a board member of IPPF/WHR, and the president of the Brazilian Interdisciplinary AIDS Association (ABIA), which advocates for the human rights of people living with HIV/AIDS.

When Dr. Parker visited our office recently, he spoke with our staff about his accidental entry into the fight against HIV/AIDS in Brazil, the lessons he has learned over the last three decades, and why he supports young researchers and activists in the global health movement.

How did you enter the field of sexual and reproductive health?

My career hasn’t exactly been a rational, planned process. I had just started the doctoral program at Berkeley in 1981, and the epidemic started affecting the Bay Area in a big way in 1982. At the time, I wasn’t working on health in any way. I was interested in politics and was going to be an anthropologist, but AIDS really shaped the rest of my life.

It’s really hard to describe what those first years of the epidemic were like – especially if you happened to be in the epicenter. People were quite literally dying all around you, and they were dying in fairly awful kinds of ways. In our post-treatment world – at least, wherever there is access to treatment – it’s hard to really get your mind around what that was like. Most of the work I’ve done over the last thirty years has been a product of historical accidents. For me, the biggest accident was the AIDS epidemic.

When did you begin working on HIV/AIDS in Brazil?

I went back to Brazil after finishing my doctorate in 1988, which had been just enough time for the AIDS epidemic to have lead to a response. At the very beginning of the response, nobody was doing research on it. The Global Program on AIDS in Geneva was founded in 1987, and it was starting up in Brazil in 1988. So, I was there around at the time all of these things were beginning to happen in Brazil.

What did you do there?

I worked with the Global Program on AIDS at the World Health Organization in its very first phase. For a short period of time, I ran the prevention unit for the Brazilian National AIDS Program and the Ministry of Health. Then I worked at the Brazilian Interdisciplinary AIDS Association (ABIA) with activist Herbert Daniel when he was dying from the disease. Before he died, Herbert asked me to try to keep ABIA from going under, so I’ve spent the last twenty-five years trying to keep that from happening.

Did your background in anthropology shape your perspective?

Early in the epidemic, almost everyone thought about HIV from a biomedical perspective, so anthropology was really useful for me in HIV-related work. The way sexuality is constructed in Brazil doesn’t organize itself along the biomedical categories of heterosexuality and homosexuality. I realized the way biomedicine was thinking about the AIDS epidemic didn’t link up with the way people were experiencing it.

In many ways, Brazil's response to HIV/AIDS has been a model of success. How much of that model can be replicated in other places?

There’s no cookbook-style recipe to replicate what happened in Brazil, but we can take certain ingredients and think about how similar things might operate in other countries. Because Latin America has similar cultural patterns, the transfer has been easier there. But some of the key ingredients of Brazil’s success – like its relative openness about sexuality – varies across Latin American countries. Most health authorities in Latin America have a lot of respect for Brazil’s achievements. This is a good starting point for thinking about shared strategies.

Some people in the national AIDS program today wouldn’t agree with me, but I think a lot of Brazil’s success is about politics. You need to have civil society mobilization that puts pressure on governments and holds them accountable. Brazil was really lucky because there were a lot of allies in civil society. There was always a risk of going backwards in really dangerous ways, but the government commitment was sustained to the extent that civil society was able to sustain pressure.

Over the past four years, the Brazilian NGO sector as a whole – but specifically HIV organizations – has been virtually destroyed, partly because of the exodus of international donors and the incompetence of the governmental donors. There's a push to open up new sources of funding – such as private donations – but there are also all kinds of structural barriers that don’t make the climate in Brazil great for philanthropy. They don’t have tax incentives like we do in the US.

How does the rest of the world compare to Brazil?

I don’t think the world has ever mobilized as rapidly as it mobilized in response to AIDS. In just three years, programs were started in 129 countries. Between 1996 and 2001, activists won the moral battle on HIV/AIDS, and it became a question of how we’re going to make global access to treatment happen.

That's a pretty big challenge.

We've had effective antiretroviral treatment since 1996, but we haven’t managed to get them to half the people in the world who need them. Global treatment cooperation sustainability is a huge problem. If we manage that, we’d essentially transform HIV into a manageable, chronic disease. But it still a manageable, chronic disease people die from if they don’t – or aren’t able to – manage it properly. It’s important to remember that the gains being made are still partial.

What work is being done to identify female-initiated HIV prevention measures?

After a boom of recognizing the structural forces that shape the AIDS epidemic in the late 1990s and early 2000s, the doctors have come back to town, and they’ve brought the pharmaceutical industry with them. They've come up with Post-Exposure Prophylaxis (PEP) and Pre-Exposure Prophylaxis (PrEP), but male circumcision has really taken over the agenda. Because their vision is fundamentally technocratic, they don’t always think to ask the question: if you snip foreskins around the world and convince men they’re protected, how does that affect the vulnerability of women? Circumcision may protect men, but I think it’s a huge danger to women, which is something nobody has really talked about publicly.

I don’t want to throw the baby out with the bathwater. The search for microbicides and other female-controlled methods is something I support. I would love to have that as part of the arsenal to fight HIV. I just want to avoid thinking that it’s simply a question of having technologies and tools available. Technology won’t solve the underlying inequalities that, ultimately, structure the course of the epidemic wherever it goes.

What is one investment we should make to fight HIV today?

We’ve got to invest in bringing new people into this field. I’ve been involved in holding a series of workshops on sexuality and social and political change. For a week in March, a wonderful group of young researchers and activists from around the world came together in Rio. This generation’s spirit, critical thinking, and desire to reinvent the field is fascinating. We need to find ways to support that passion.

Many organizations do a good job of supporting youth, but the thirty-somethings don’t get much investment. These are the people who have the potential and the experience to make change happen. That’s a place where energy and resources should be invested, like through structured mentoring. The people I've mentored have ended up mentoring me more than I ever mentored them.

What's a key lesson you want to pass to the next generation?

It was really useful to have the experience of working in an intergovernmental agency, a government program, a leading NGO, and a university early in my career. I always push my students to take advantage of the opportunity to work in these different contexts. It gives you a chance to figure out where you feel most comfortable and where you can make the biggest contributions.

I have the utmost admiration for people who can negotiate bureaucracies, but I was awful at it. That was a really good lesson to learn quickly. In the university, I could do the things I wanted to do intellectually, but that didn’t satisfy me politically. The work I’ve done with ABIA and other NGOs has allowed me to do things that have more of a political impact in the world.

Also, I’ve found it is really useful to create spaces for interdisciplinary dialogue. Bringing researchers, policymakers, and frontline service providers together to talk to one another about cutting-edge issues has been immensely productive. If you look at our successes, it’s been where those kinds of dialogues happen in productive ways.

Can you tell us about your new book?

The book I’m working on is about the politics of the global AIDS epidemic. One of the big problems we face right now is that our ability to make big connections has gotten smaller and smaller as time has gone on. The way we imagined HIV/AIDS as a global epidemic served as a vehicle to invent the field of global health in the twenty-first century. That way of thinking about HIV/AIDS was really visionary and is very important.